Supporting people living with dementia with Lewy bodies (DLB) and their families – Supporting Stuart

Alison is a Health Psychologist. She works as a dementia researcher at Newcastle University and supports people who have Lewy body dementia in an NHS service. She shares her experience of supporting a family whose father has Dementia with Lewy bodies (DLB).

Understanding DLB

DLB is a condition related to Parkinson’s. It is caused by abnormal deposits of a protein called alpha-synuclein in the brain. DLB is one of two conditions known as Lewy body dementias. The other is Parkinson’s dementia. The causes and ways of managing the symptoms are similar. The main difference is the timing of when you start experiencing symptoms. People who have movement symptoms (such as tremor or stiffness) for at least one year before symptoms of dementia, will often be given a diagnosis of Parkinson’s dementia. People who develop dementia symptoms before or at the same time as movement symptoms, will usually be given a diagnosis of DLB. To help confirm the diagnosis people may have a scan known as a DaTSCAN. This looks for the loss of dopamine-containing nerve cells within the brain.

Stuart’s DLB symptoms and diagnosis

Stuart was diagnosed with DLB two years ago. He was referred to a memory clinic after experiencing visual hallucinations. Hallucinations are a common feature of DLB. These are most often things people see but may involve other senses such as hearing or smell. Stuart saw people sitting in his lounge including a baby sitting in his favourite armchair. He also saw faces in the trees outside his bedroom window and saw a giraffe where the standard lamp was in the lounge. He did not mention this to his family for a while because he was worried what they would think but he avoided sitting in his usual chair, so his wife Martha realised something was wrong.

Helping Stuart to manage hallucinations

Stuart was normally able to understand that what he saw were hallucinations but sometimes he checked with Martha or one of his daughters. His family knew that the hallucinations seemed very real to him. They explained that what Stuart saw was caused by his eyes playing tricks on him because although Stuart could see them, the rest of the family could not. Stuart learned strategies for dealing with his hallucinations such as blinking or walking towards them which often made them go away. He had a brighter light fitted in the rooms where they often occurred and moved the furniture to reduce shadows. He also removed patterned cushions which sometimes looked like cats.

Understanding changes in sleep

For a number of years before his other symptoms appeared Stuart had experienced REM sleep behaviour disorder (RBD). This is another key feature of DLB. Normally during ‘rapid eye movement’ (REM) sleep the body experiences temporary muscle paralysis while the brain remains active and dreaming. In RBD, this does not happen. This means people act out their dreams during sleep by shouting out and moving around often vigorously. Stuart was worried about Martha being unintentionally injured so they decided to use separate beds. Stuart moved his bed away from the wall so he did not hurt himself and made sure there was nothing on his bedside table which could get damaged.

Managing changes in his energy levels

Stuart also experienced fluctuations in his attention and alertness. This meant that on some days or parts of the day he was fully alert and could take part in conversations and play with his grandchildren and at other times he seemed confused and less aware. At first Stuart’s daughters found this frustrating and thought that their dad was being lazy and did not want to take part in family activities. They felt better once they understood that fluctuations are a common feature of DLB, and that Stuart did not have any control over this. They learnt to make alternative plans depending on what sort of day Stuart was having.

Keeping active and enjoying activities

Stuart also developed Parkinson’s like symptoms including muscle stiffness, and a slightly shuffling walk with slower movement. He was prescribed a very small dose of a Levodopa drug which is used in Parkinson’s. This helped improve his symptoms. Stuart and Martha were asked to look out for any worsening of his hallucinations which can sometimes occur with this drug but fortunately Stuart did not experience this. To help with his balance and reduce the risk of falls Stuart joined his local council gym. He found a trainer who was used to working with older people and could suggest suitable balance and muscle strengthening exercises. Stuart enjoyed getting out and taking part in this regular activity. He also continued to play golf with his friends by playing a shortened game and using a golf buggy between holes.

Managing everyday challenges

Stuart did not yet have significant changes in his memory although his short-term memory was a little worse. He did find it more difficult to think quickly and was aware that his reactions were slower. He therefore decided to stop driving. Martha and his daughters learned to give Stuart time to answer questions and not to move quickly from one topic to the next as this could be difficult for Stuart to keep up with. Stuart also found it difficult to learn to use new devices, so when anything broke such as the kettle or remote control, they tried to replace it with similar items.

Martha and Stuart sometimes felt a bit isolated because DLB is less common than Alzheimer’s and vascular dementia and they did not know anyone else with the same condition. They found the Lewy Body Society website a helpful source of information. They also used the Dementia UK Admiral nurse dementia helpline to talk to a specialist dementia nurse. This is available on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm), by emailing helpline@dementiauk.org or by booking a phone or video appointment .

For advice and tips on helping other people to understand different dementia symptoms read our article to help understand dementia.

For ideas on staying healthy and active read about Supporting Health and Wellbeing.

For suggestions on how to modify your home environment to make it more dementia friendly please read our article about Managing symptoms at home.

Find out more about Parkinson’s Disease and memory through Parkinson’s UK.

If you are a healthcare professional, use this helpful toolkit which supports detecting and managing Parkinson’s Disease.